Tag Archives: advocacy

Phone calls, phantom panels and advocacy

May 7th, 2017

The sign on the door said “closed” but did not explain. Further investigation revealed three clinics under the same management were closed by the court at a bankruptcy hearing. As any parent of a child with mental health problems knows, finding a child psychiatrist or clinical nurse is not an easy task. The need for a new therapist as well makes the task even more daunting.  

Cheryl started exactly where she was supposed to start, with a call to their insurance company. “Let us do a search” said the representative. Unfortunately the names they gave her were dead ends due to the doctor not accepting new patients, no longer working there, etc. So when she called the insurance company back with that information they said again “Let us do a search.” This process was repeated more times than Cheryl could count. With each search the options would be further away from her home.  She told the customer service representative “As long as I don’t have to hop a plane, I’m fine.” Still no luck. The insurance company’s list of providers seemed to be what is sometimes referred to as a “phantom panel,” names on a list that are not connected to an actual, available doctor or provider.

Six months after the clinic closed, Cheryl’s son still did not have services and his pediatrician said she was no longer comfortable prescribing his medications. The insurance company was not budging in expanding their panel because they said their panel was big enough. What had become an exercise in futility was fast becoming an emergency.

Cheryl reached out to me for support and guidance. First, I referred Cheryl to the local Family Resource Center. I knew they had the ability to do an expedited referral to an area clinic that was not in her network. Then one morning, coffee in hand, we sat at her kitchen table and called her insurance company. When they told Cheryl they would do another search, I got on the phone. I explained who I was and that Cheryl’s son needed an out of network provider approved. We explained that this had been going on for six months, that Cheryl had done her due diligence by calling all the names provided to her and that no one was available. I was able to explain the larger context:- that three clinics had closed leaving lots of people without services and a limited pool of potential providers more stressed than before. I also explained this child was a DMH client with serious mental health concerns and numerous hospitalizations. That he had not had a hospitalization in a couple of years probably at least in part due to the careful combination of services that he had been receiving. Further, that he had recently been showing signs of decline.

I then said receiving comprehensive mental health treatment was in fact medically necessary and that it was obvious that their in-network panel was not sufficient, at least not in this area at this time. I requested an out of network level of benefits be authorized. The representative was very receptive and took the necessary steps that resulted in a “single case agreement” being approved.

Parents often comment about how hard it can be to navigate through this confusing system. So often they say “I feel bad for people who don’t have the support.”  Cheryl says “I just kept asking for help but– I didn’t know all the right words to use.” This was coming from a parent who is a great advocate for her child. During the previous 6 months she talked to DMH, called doctors who were not on the list, tracked down the old doctor for advice and even talked to the newspapers, still she needed support.

Cheryl called me recently and gave me some news. The psychiatrist her son has been seeing now for over a year is leaving the clinic and they have not been able to find a replacement. They are recommending she start looking elsewhere. After telling me and the DMH worker she started where she knew she had to start, the insurance company. Once again she made that call.  “Let us do a search,” said the representative.

Nancy Collier is a Family Support Specialist in the Lowell Area. She was involved in advocating for mental health parity legislation in Massachusetts.

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Everyone needs a posse of parent warriors

April 23rd, 2017

Somehow, you can never escape the influence of your mother.  Yet, sometimes you don’t see it for a long while, especially if it shows up in a different context.  Often, in fact, both the influencing and not-seeing can be a very good thing.

My mother believed in the solace and wisdom of other women, especially other mothers.  She grew up in a generation where woman shared secrets-that-weren’t-secrets only with each other, like whether you colored or permed your hair.  Women always went to the ladies room in twos or more in public places and spoke in low voices about “women’s problems.”  She had a group of women friends, kind of a posse, who knew each other for a long time.  Among this group, if there were child-rearing, marital, drinking, health or other issues, those too were shared and kept quiet about.  Besides this group, her sisters were her most precious resource, keeping family connections and, sometimes family secrets, intact.

Although I thought it was silly and even wrong, this secret keeping cast its shadow for a long while.  I was uncomfortable talking about things that were personal, claiming that respect for privacy was the only thing that motivated me.  Once, I came down to breakfast in my college dorm, to find two friends arguing hotly about the merits of Clairol versus L’Oreal hair color.  I put down my food and was quiet for a while, not joining in, not knowing why.

But I believed in the importance of a posse, a group that you could trust and seek out for their knowledge and comfort.  I believed in the value of other mothers.

Then my older son got sick.  He was only in first grade when we emotionally fell off a cliff.  He went from being an anxious child to one who was hurting himself in a few short months.  There was no mistaking that we were the family dealing with significant mental health issues.  Some of my friends drifted away, others stayed but were bewildered.  Still others offered help, advice, a listening ear and most of all the knowledge that whatever I shared, our privacy would be respected.  I found I needed that, because it gave me some space to try and understand how my life was changing and search for a new equilibrium.  It wasn’t secret keeping exactly, but my close friends closed ranks and I felt a little safer, more protected.

I needed that feeling of safety, trust and comfort the first couple of years of my son’s illness.  Like many parents whose children have mental health issues, my life often felt like it was in freefall.  If we planned an outing, it was tentative, making sure my son was okay minutes before we left, so that he could manage without being overwhelmed.  If not, we changed our plans. Heck, if I planned a meal, I never quite knew if we could make it through the entire thing or if there would be a meltdown.  Uncertainty became my daily companion.  Sometimes there were good stretches but there were lots of time when the school would call, his meds would suddenly stop working or he’d develop new fears, obsessions or even frightening behaviors.  I alternated between changing my battle plan to throwing my hands up in surrender.  There were few spaces where I felt like someone had my back.

Then one day came when I started talking about my son’s struggles as well as my own experiences complete with triumphs and disasters.  First I talked at a support group I attended and later in a support group I ran.  Other parents commiserated, cheered me on and never judged.  We would often continue our conversations in the parking lot, treasuring the sharing.  One mom, Theresa, had a son with a mood disorder, who was also using substances.  He was unpredictable and sometimes stole cash from her wallet.  She’d been widowed a few years before, about the same time her son began showing symptoms of bipolar disorder.  Her family thought she’d indulged him too much after losing his dad and that she should have thrown off her own grief earlier.  Theresa would come into the group and pour out her heart and her shoulders would relax, her face would open up and she’d feel the power of the posse. Dave, whose son had ADHD and was going through a difficult divorce, would come week after week, not saying much, but listening hard, nodding often and brought little bakery gifts.  It was his posse, too.

Motivational speaker Jim Rohn says, “You are the average of the five people you spend the most time with.”  Sometimes that’s family, but often it’s your group of friends. Your posse can have a big influence on how you feel, what you think and even what steps you take.  The people in it can support you and believe in you, but they can also shake their heads at you and nudge you in a different direction.  It’s not a rubber stamp, letting you off the hook.

Today my posse is filled with parent warriors.  They are advocates and influencers, passionate and strong.  They give me support, challenge me and believe that we can make a difference in children’s mental health for our families and lots of others.  I believe in them, too, and am sure they are right.

My son is an adult now, still dealing (mostly successfully) with his mental health symptoms and he’s doing okay.  But that wouldn’t be true without years of advocacy on my part and the part of others.  I wouldn’t have been able to push, to share my stories publicly and keep going without my posse of parent warriors.  Nobody does this alone.  My mom was right about that.

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Why hope will never be silent

April 10th, 2017

Harvey Milk once said “Hope will never be silent.” That quote has been an essential quote for me since the ninth grade.   As long as we keep hope in our hearts, we can never be silenced, and we can prevail.

This quote means so much due to the relevance to what I want to accomplish in my life and my future career path. This quote is also relevant to the world we live in today, and to all of the people advocating for the rights they deserve. Hope plays a huge part in our society, and we can’t just give up on the concept. If we all simply gave up hope, what would we have left? We would have total destruction, and tears in the eyes of the ones we love the most. We’d have a complete lack of progress, and more pain than we could ever begin to handle.

When I think of the word “hope” and all of the people I know who embody it, I also think of the word “fighter.” Fighters not only have hope in their heart, but they advocate for the causes they truly believe in, and fight against the things that take away from their cause. I like to hold the belief that I am a fighter. I’ve been through my fair share of tough times and challenges in my life, but in total honesty, I simply want to use my lived experience to help those who are going through similar struggles in their lives. No one should have to fight these demons alone, and that is why I want to be involved in the mental health field,

Trying to stay positive is a hard thing to do, but I really try to do just that. Even if at times staying positive seems impossible, it is vital because all negativity does is drag us down. For me, my friends play a huge part in my positivity. Almost all of my friends have been diagnosed with a mental health “disorder.” I put quotes around disorder because although these are not “normal” for a brain, they still play a part in who we are, even though that’s not all there is to it. The people who have taught me the most about hope are the ones who have these disorders. They’ve taught me about resilience.

I know in my heart that I am the fighter I am because of the friends I have gotten the pleasure of knowing. I not only fight for myself, but I fight for all of the people I love who have taught me that everyone has something to say. Sometimes they simply need help to say it. Giving everyone the chance to speak up on issues they believe in is important. Listen to the hopes and dreams of others, because hope is vital to societal growth.

No matter how grim a situation may seem, you can find hope not only within yourself, but in others as well. No one is incapable of having hope in their soul. Sometimes they just need a helping hand to guide them. So, in honor of Harvey Milk, remember “Hope will never be silent” and we as a human race can never be silenced.

Rachel LaBrie is our guest blogger. Rachel dreams of being a young adult fiction writer. She currently has 6 animals who she truly adores. 

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Her story changed everything

March 27th, 2017

I first met Linette because of her urgent phone call.  While waiting with her daughter for a psychiatric bed, caring for her other child and staying in touch with her office, she was calling, emailing and messaging anyone she thought could help.  Most didn’t get back to her.  I did.

Her young daughter was waiting for an available bed and had been waiting for more than a week.  We talked a bunch of times.  We made calls and sent emails.  We strategized about people to speak to, steps to take and stones to turn over.  Then Linette kicked it up a notch.  She went to the state house and talked to legislators.  She called state agency heads. She told her story again and again, insisting people listen.  They did and, after 3 anguishing weeks, her daughter finally got into a psychiatric bed and later into another program.

Linette and I both breathed a sigh of relief.  I think we both knew, however, that there would be more moments of crisis and an ongoing need for advocacy in her daughter’s future. This is what happens when a mom tries to get her child’s intensive needs addressed by a wobbly, deficient system.

Linette learned that one of the best tools she had was her story.

Today we have a nice, succinct term for Linette’s experience.  We call it “boarding” which is defined as waiting in emergency rooms and other areas for an inpatient bed. But just because we have a simple, snappy term doesn’t change the experience.  It doesn’t capture it either.  It’s a heartbreaking, exhausting and discouraging thing to go through and it happens to families across the country almost every day.  It can change a parent.  It can certainly change how you view the system that’s supposed to help your child.

Over the next couple of years, Linette and her daughter went through enough obstacles, barriers and bumps in the road to make it abundantly clear that, while there might be well-meaning people in it, the child serving system wasn’t helpful or benevolent.  She battled for funding, for eligibility, for services and for slots in programs.  Linette learned the jargon and became an even savvier strategist.  She told her story again and again.  That and her advocacy changed things for her daughter.

She found other parents online and in person.  Some had hard-won wisdom to pass on; others needed to learn skills and knowledge from her.  She encouraged them to tell their stories, too, not just to help their own children but to repair and remake a set of services and treatments earmarked for kids but often inaccessible and sometimes downright unfriendly to families.

Linette never said “no” when asked to tell her story.  She has told her story to national magazines, and on national television news.  She can talk about the financial hits that families take when their child has mental health needs because that’s happened to her.  She can talk about the stigma parents experience because she’s had it happen to her, too.  She can talk about the advocacy, the persistence and the smarts it takes to get your child treatment, because she knows it’s a fact.  She can also tell you that the heartbreak never completely goes away, because it doesn’t.

Last week, Congressman Joe Kennedy told Linette’s story to Congress.  He said that families like hers needed more than “the cheap luck of a broken system.”  Linette had walked into his office not long ago and told her story.  This time it was not to get her daughter a needed service, this time it was to change things for families like her.  She keeps telling it, hoping it won’t be representative of lots of family stories in the near future or any future.  She’s waiting for that day.

Telling your story changes you.  You begin from a place of pain and disbelief.  You become determined.  You become strong, you become unrelenting, you become strategic.  You fight for the personal – treatment for your child and access to services for your family.  Your story is rooted in what you want to say.

Along the way, you meet others doing the same thing for their child and their family.  You realize the fight is bigger than you.  You realize that others are your comrades and fellow warriors.  The intent of your story changes too.  Now you are focused on how your story can change things.  Now you are focused on what you want others to hear.  You want them to be galvanized and a warrior too.

Linette’s story has changed a lot of minds.  Some of them are decision makers, like state legislators and Congressmen. Some of them are the people who work with her daughter and her family.  Many she will never know.  But they’ve read part of her story in an interview or saw it on a news story.  Or they watched the video last week that helped keep health care in place for children like her daughter.  She’s a difference maker and we need more of them, Lots more of them.

 

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3 things I’ve learned about fake news from mental health advocacy

February 20th, 2017

I was plunged into the mental health world when my son was 7 and made his first suicide attempt.  I got him help, of course, but I needed to understand what was happening to him and to our family.  Overnight, I became a mental health researcher and devoured any and all stories I could find about mental illness.  I depended on the integrity and truthfulness of good reporting.  I also developed a pretty good hogwash detector.

I’ve discovered lately that I need all those skills and more.

Stories and accusations about fake news crop up everywhere you look.  According to the Mirriam-Webster dictionary, the word “fake” is in the top 30% of words looked up and means not true or real.  When it’s applied to a news story or new information, it’s intended to disparage the reporter, the sources or the content.   I can tell you from personal experience, however, that just because the truth or information is hard to handle, doesn’t mean it’s fake.

Fake news and information rely on the vulnerability of the person hearing or reading it to gain traction.  Believe me, I’ve been there.  When my young son would have a meltdown and then weep afterward that he was bad, I wanted to believe it was temporary, didn’t need serious treatment or was just a phase.  Sure, he was out of control.  Yes, he sometimes hurt himself.  But he felt remorse, so didn’t that count for something?  When therapists and teachers told me not to worry, part of me wanted to stop looking for the tough answers.  I was tired and overwhelmed.   I didn’t want to hear anything that was hard to handle.

Media outlets, whether they are mainstream, lean to the right or left, often report stories differently.  They don’t agree on the focus.  Just like the media, different parts of the children’s mental health system never seem to agree.  One professional will offer a different prognosis for your child than the next one.  Another one will come up with a completely new diagnosis, when you’ve already got three. Like many parents, I heard wildly different recommendations from the psychiatrist, the teacher and the therapist.  The psychiatrist (who turned out to be right) thought my son had a pretty serious mood disorder.  The teacher thought my divorce, our move and change of schools were to blame.  The therapist didn’t want me to be alarmed since children often grow out of their problems.  They couldn’t be all right, could they?

I had to learn to listen with both my head and my heart.  I needed to face the difficult facts and also feel the compassion being offered to me.  I learned that people have different training and biases and are often blind to the fact that they could be misleading you. Sometimes it’s not intentional.  Sometimes it feels like it is.

My son had four different psychiatrists before he turned 12.  One, Dr. G, was especially charming and very confident of his viewpoint and recommendations.  During one visit, he looked me in the eye and spoke charismatically and sincerely.  He said he wanted to retry a medication that had been a disaster a year ago.  He said, “We both want what’s best for your son and this is absolutely the right move.  As soon as we get up to the right dosage, he is going to be a different child.  You’ll be amazed. Just trust me.”

I am a pretty good critical thinker and know how to wade through information.  But I didn’t listen to myself.  Instead, I did trust him and that medication was a disaster once again.  My son ended up in psychiatric crisis.

Dr. G was likeable, charming and smart.  He was confident that he was a good doctor and overall I think he was.  But I had a very complicated son, whose medication reactions were unusual and extreme.  What Dr. G told me – that my son was going to do well and be a different child – was wrong.   I trusted his information because he was the one saying it, not because it was true.  I relied on how much I liked Dr. G.  I confused the speaker with the speech and forgot I was an expert too. After that, my hogwash detector got louder and less forgiving.

Between my hogwash detector, wisdom gained from advocating for my own child and later, other families, I’ve learned some key points.  Those things are turning out to be pretty useful when confronted by fake news.

  1. Don’t confuse how you feel about the source with the story being told. Just like Dr. G, many people are wonderfully persuasive and you want to believe them.  I’ve had several friends tell me news items that I half believed because I liked them, later checking the items out and seeing they weren’t real after all.  We all know who has rigorously checked something out and who isn’t so careful.  How you feel about someone cannot substitute for carefully vetting the information.
  2. Watch out if the information or news is focused on attacking someone. Reliable sources report the facts, which are different from opinions.  I have been disparaged and disrespected as a parent more times than I can count.  Not because I was wrong but because emotions were high or bias against parents was in play.  Good information and real news is about what is happening in front of us and not about personality.  Did I mention that someone attacking me or another parent has ramped up my hogwash detector?
  3. Beware of polarizing tactics. I found out early on that different parts of the children’s mental health system often don’t agree.  There is a lot of finger pointing by schools, by hospitals, by clinics and others.  No one wants to be accountable.  When polarization is at its worst, nothing productive happens.  Children and families don’t get what they need.  It’s the same in a polarized news environment.  We agree on very little and very little gets done.

There were times when the news about my son’s illness was awful and I confess I said to myself, “I just don’t believe this.”  I wanted to believe the less troubling stuff and ignore the rest.  Sometimes I did, but mostly I learned that the truth helps me make better choices.  I learned to value integrity and good reporting.  These days, it goes far beyond the mental health world.

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